Conversing with a half dozen people is more wearing
Than biking 20 km in traffic
Participating in a worship service is more demanding
Than biking 30 km dodging rain showers
Walking into a store for a quick errand can be more frustrating
Than biking 40 km into a head wind
Listening to live music for half an hour requires more recuperation
Than biking 50 km through hilly country side
Driving for 4 hours will affect my balance more
Than biking for 60 km on a chilly day
Some activities have a way of causing neuro fatigue
While cycling rejuvenates the whole person
The physical exertion
The rhythmic movement
The outdoor ambience
The wind in the trees,
The call of the cardinal
The chirping of crickets
Sounds that respond to each other
Sounds that sidle up to you
Sounds that heal,
Sounds that sooth the senses
Sounds that lift one’s spirits
Being neurologically atypical, things don’t add up in a way that makes sense to others. While I am able to do certain activities with ease and experience satisfaction, there are plenty of activities that leave me challenged.
In planning and preparing for my first multi-day (14 days) cycling event 4 years ago I did not have much time to train. As a result I decided that doing a 15 km (10 mile) ride 5 mornings a week would have to suffice for ‘training’. Now I should mention that the 15 km included about 120 meters of climbing and I gave it my all. Eventually that meant I could complete the 15 km in under 30 minutes. That give me a good aerobic workout and help build some strength in my legs.
Here I am 4 years later and once again preparing for a multi-day (70 day) cycling event. This time I have more time to do my training. No excuse this time for not having enough time to do the training.
It’s not my extra time that is making me diligent about my training. It’s that I am not sure what my endurance will be like this time. I don’t want my injuries to be a hindrance to my participation. Since my recovery and adjustment to living with ABI creates a big unknown factor, I feel compelled to over compensate. My diligence in training is focused on eliminating as many possible snags as I can.
So I make sure I can handle the distance – doing as many long distance rides as I can. Four years ago my longest pre-event ride was about 50 km.
So I make sure I can handle the climbing – I have taken on a Mt. Everest Challenge of climbing 8848 meters in one month of cycling. Last time I just didn’t check it out.
I have had some people wonder how I could possibly do a cross Canada (6700 km) ride while dealing with ABI. Fair question. While there are physical side effects to living with ABI, working on my physical endurance helps deal with other factors related to my ABI.
Cycling is a relaxed way to enjoy the countryside. Cycling is a way to live life at a relaxed pace. It means decisions that need to be made have time. The activity is not neurologically demanding. Recently while riding, I was doing fine, things were relaxed, the traffic decisions were fine. Then I stopped to pick up some granola bars at a grocery store. By the time I left the store I had encountered difficulties with 2 cashiers and in an attempt to moderate my frustration went back to the display shelf twice, and had the manager come over to see if she could be of help. I hope I had not been too irate with the cashiers, but I told the manager that the pricing of the products was just too confusing. The tags did not clearly show which products were on sale – or let me say I found it confusing and quickly overwhelming.
In reflecting on the situation later, a different manager might have has less patience for my confusion and possibly thrown me out of the store. I decided it’s easier to bike 50 or 80 km then to buy some granola bars in a busy grocery store with too many products on display and double and triple pricing information. (Regular price. Sale price for 1 item. Sale price for 3 items.)
When I started outdoor part of my training lately, the real significant of my ABI and physical effort started to become noticeable. On a regular ride I felt fine. On the longer and more strenuous rides I would arrive back at home and feel light headed. As I continued with my training the light headed experiences became less noticeable. My most recent ride of 140 km in one day left me with no side effects of being light headed. I have decided to do a 4 day ride in a couple of weeks to see if I need to make any adjustment before I leave for Vancouver to begin my cross Canada ride.
I chose to do a 4 day ride as part of a pattern I have developed while working with an OT. Each time I would undertake an activity she would ask me if it was the first time doing it since my brain injury. As a result I have camped in the back yard for a couple of nights before leaving home for a camping trip so I could make adjustments before doing the real thing.
The over compensating is partly due to not necessarily being able to adjust on the fly, something that I wouldn’t have thought twice about pre-ABI.
I am writing this in the wee hours of the morning because I am dealing with several side effects of attending an event that set me back. It’s not that I went into the event unaware and was blindsided. I wasn’t sure what to expect but I knew I would not emerge unscathed.
The fact that I am writing this when I would otherwise be sound asleep speaks to one of the side effects. For the past 3 weeks or more, as I have been doing some serious physical training, I have had no interrupted sleep. That is by far the longest stretch in over two years of finding quality sleep.
The past few hours have been different. My dreams have been wild. My dreams seemed just a bit too real, not being able to discern dream from reality. My dreams have been unsettling and upsetting. And right now I am wide awake because I can’t get back to sleep.
What got me into this
For one day I had put aside the intentional planning that my occupational therapist has been drilling into me for the past year. I did not work out a back up plan, unless retreating to a quiet place qualifies as a back up plan.
And yet, as I look back on the evening, I realize I have developed some habits that protect me from sensory overload and succumbing to extreme neural fatigue. I know to seat myself in an auditorium so that I can make an inconspicuous exit. Exiting from a venue that seems to cause disruption, perceived or real, adds significantly to my sensory loading and therefore my recovery time.
My decision to attend the event was a calculated decision based on an anticipated Cost/Benefit consideration. That’s why I am not surprised to come away from the event feeling content despite having my day, or rather night, significantly interrupted. I chose to attend a 50th anniversary celebration of an institution that I have been well connected with for 30 or more years. The sense of contentment in the middle of dealing with disruption comes from the affirmations that I serendipitously received in the course of the evening. At the same time, the sense of contentment comes from hearing from different people and how they are doing.
Modifications I find helpful
Large groups wear me done. With larger groups the negative effect is exponentially greater. The level of noise is a minor factor yet becomes significant over the course of a couple hours. More significant is the processing of too many sensory impressions in a short block of time; following conversations, reading body language, interpreting tone of voice, looking for segways into a conversation, and managing the emotions of the moment.
By seeking out quieter places, places with fewer people, I found myself engaged in one-on-one conversations and avoiding the complexity of small groups. By keeping myself visible in the quieter areas, people I know and have worked with ended up finding me and so I didn’t feel isolated.
Being in a banquet hall with 6 people at my table and another 300 guests in the hall is quickly overwhelming. I intentionally engaged with only the two guests on either side of me rather than the whole group at my table. The second modification that I made was to arrange with one of the guests at my table to text me at certain junctures in the event. So after some initial introductions I left the hall for awhile and re-emerged from time to time to catch the key elements of the evening.
A big part of managing my ABI symptoms has to do with managing my expectations when I attend an event that I know will likely set me back. That’s where the Cost/Benefit plays a significant role. It might seem a bit selfish, but if the event won’t give me a boost then the negative after effects become a burden, threatening to cause a downward spiral that is clearly counter productive.
The event has left me with many wonderful memories. By keeping my expectations low, yet allowing myself a certain level of vulnerability, wonderful experiences did emerge. I can recount many wonderful moments but let me share a couple of notables.
I had one mother of a former student share a number of experiences with me. The one she was most eager to share was how her daughter missed the whole first week of school. She was too nervous to bring herself to accept me as her teacher. In the end she decided that I had been her most inspiring teacher. I recounted with the mother her daughter’s strengths (from 15 years ago) and was not surprised to hear what activities she is presently doing.
After sharing briefly with one former colleague he offered to pray over me, to request healing. To me it spoke to his strength of character and his sense of ministry. And so there were a variety of different kinds of sharing throughout the evening that left me encouraged, hopeful and with a sense of being surrounded by people who care and seek to be supportive.
It might take a day or two to recover but after an event like last night it is not a discouraging or frustrating walk. The power of prayer, the power of living in community with arms reaching out, takes down the walls of isolation that an acquired brain injury easily creates.
And now, I’m ready to sleep some more. I need to be ready to do a short presentation in the morning – part of measured planning albeit, this one has a back up plan.
The joy of being dead tired is somewhat akin to the blessing of experiencing pain. (Chronic pain is a much different matter.) Pain is a gauge that the activity one is doing is harming you. Pain is the gauge to alert you that you need to stop to prevent further injury.
Being dead tired is a clear signal that you need to stop what you are doing. Part of being dead tired is realizing you have just put your body through a strenuous activity and have prevailed.
Inducing Physical Fatigue
I decided against attending the Good Friday service since the numerous songs would rather quickly contribute to my neural fatigue. The down side of that is having to make an early exit from the service. This always brings with it a measure of disappointment as it once again highlights one of my ABI limitations.
My alternative was to go for a leisurely bike ride. By leisurely I am referring to my pace, not the distance. I chose a route with quite a varied terrain. The route involved some hills that required me to use my lowest gear (A 15% climb in places). The reward being some great down hill stretches in which I exceeded 60 km/hr (40 mph). Though going down hill at that speed does make me a bit nervous about the risk of a spill, road rash and other possible injuries.
As the two hour mark approached I had covered over 35 km, I was longing to get home and be done. At the same time, despite my physical fatigue I was feeling great. I was still able to push on without experiencing much discomfort. The best part about physical fatigue is that it comes with a wonderful reward – a blissful night of sleep.
Reducing Neurological Fatigue
In contrast to physical fatigue, experiencing neurological fatigue is difficult. Neurological fatigue interferes with sleep. Neurological fatigue leaves me feeling at loose ends, no motivation to do anything, unable to focus and therefore often at a loss as to how to address it. I have gradually figured out that doing something physical that is repetitive and not too demanding physically and cognitively very low key is the best option.
Recently when I was experiencing neurological fatigue, I was looking for a way to help alleviate it. I was away from home, so cycling wasn’t an option. Walking was somewhat helpful but I lacked the motivation to keep going. (With cycling, it’s the bike that keeps me going, whether it’s a slower or faster pace depends partly on the terrain.) I found a quiet place to relax, read a bit and did some writing. For two days I experienced no relief. Being in an unfamiliar place interfered with recovery.
It wasn’t till the day after I got home that I began to experience recovery. I had enough initiative to do some cycling. I headed out beginning with a very relaxed pace. As I ‘listened’ to my body I was gradually feeling the neural fatigue diminish. Gradually my pace increased. The quietness of a well tuned bike (a quiet bike is a happy bike) allowed me to take in the natural sounds around me. The sounds of birds, the wind in the trees, the chatter of squirrels, the occasional bark of a dog are all soothing sounds, sounds that seem to belong. The sounds serve as an introduction to what I can expect to see as I cycle along.
After cycling an hour or two I get home feeling physically fatigued. With the neural fatigue being noticeably diminished I soon find myself napping. The bliss of a good nap, the feeling of waking up relaxed and refreshed has no equal.
The Search for Healing Sleep
Most of my life I have been blessed with the ability to be able to lay down for a nap when I needed it, even when we had a house full of young children. With ABI it’s the neural fatigue that causes serious disruption to my sleep pattern, both night sleep or a mid day nap. Neural fatigue interferes with enabling one’s brain to slow down; unable to put active functions like problem solving, creative thoughts on hold.
Bringing one’s body back into balance makes physical fatigue a real blessing. Each time I experience success with physical fatigue, the activity that bring on physical fatigue becomes a motivation for countering the next episode of neural fatigue.
Being able to trade neural fatigue for physical fatigue is a much desired conversion experience.
I’ve completed two weeks of serious outdoor training for my cross Canada ride. While on the one hand it is more motivating to be training outdoors, it is also more challenging. There are several reasons for the challenges which I have been only partially prepared to deal with.
While living at the top of the highest ridge in the area (600 ft above Lake Ontario, 1000 ft above sea level) gives some great panoramic views. However, no matter how I plan my route I am in for a long climb every time I’m nearing the end of my workout. Climbing the last 4 km to get myself home takes a lot of will power. Somehow, it doesn’t seem to make much difference whether I have just completed a 25 km ride or a 65 km ride, the climb seems to be equally daunting.
Choosing to stay on the ridge doesn’t reduce the amount of climbing as there are numerous creeks and ravines with tend to be carved deep into the landscape. Wonderful for great views and vistas. In one week I logged 2300 meters of climbing. So I’ve decided to challenge myself to complete the Mt Everest Challenge during the month of May. The goal is to climb 8,848 meters in the next 31 days.
While the snow just disappeared a little over two weeks ago, spring is not really here in full force. This morning I headed out prepared for the 5 Celsius temperature with a brisk wind out of the east. Alas, at about the mid point of my 26 km ride it began to rain. Rain at 5 degrees is not pleasant at the best of times. Going downhill with a headwind requires one to pedal hard just to try to generate a bit of warmth. However, going 40 to 50 km/hr into the wind just seems to blow every shred of body heat away. The main consolation was knowing I would get to the bottom of the long decline soon enough regardless of the effort I put into it.
When I compare the cold weather cycling to the summer weather, it’s a tough call as to which I prefer. While it’s easier to dress for the weather when it’s cold, I would prefer to avoid both extremes.
I find cycling beneficial for my recovery. If I’ve had a day with activities that have put me near my limit for neural loading, getting out on the road helps quite a bit with recovery. The physical workout, with it’s regular rhythm, requiring minimal cognitive functioning, does wonders in alleviating a good amount of neural fatigue. I choose routes away from heavy traffic and city type distractions. Most of the county roads have wide lanes and paved shoulders much of the way. Secondary roads work well because I encounter minimal traffic.
While I am encouraged that cycling helps alleviate symptoms related to the after effects of my injury two years ago, I still need to be mindful of what sensory loading my cycling has on my overall well-being. This week it’s been a bit of a mystery whether the increase in my training has contributed to my sensory overload or whether I have taken on too many other activities while doing my outdoor training.
Mindfulness and Balance
On Friday I volunteered at an outdoor education centre for 4 hours helping build a set of stairs out of cedar logs. The physical part of the work was not very demanding. I took a couple of breaks to ensure I would have the necessary endurance. In hind sight what wore me out was working with 2 other people, discussing the finer points as we were working, deciphering instructions, and adjusting my thinking as the job progressed. The demands on my mental flexibility is what was most wearing. In the end it wasn’t physical fatigue, but neural fatigue. The drive home, only 8 km was difficult. The bike ride later that day helped me recover from the neural demands of the morning.
The next 7 weeks of training will be a balancing act. I will need to be mindful of balancing my training activities with my other daily responsibilities and routines. My one consolation is that the cross Canada cycling will most likely be less demanding than the terrain that I’m dealing with during training. Will it be a ride in the park… ? Who knows.
Living life with ABI comes with many surprises and unexpected turns. That makes the outcome of many days very different from what I expect or want. It would be very helpful if my days could be more predictable and therefore be able to count on following through on commitments that i have made or would like to make.
There is a Chinese curse that says, “May you live in interesting times.” Unpredictable, unexpected, unmanageable are all descriptions that defy being able to follow through, unless I make contingencies. The contingencies planned into my day can make the difference between a successful day and a bad day. The contingency planning takes on a variety of forms.
The contingencies around driving can get quite involved. First of all, I schedule a break every hour. In addition I try to arrive an hour ahead so I have time to recuperate from the drive (or ride) if I’m expected to participate in an event. Recently I did a favour for my son, offering to pick up a furniture order for him at IKEA. I contacted him mid day after completing my own errands that I was fine to follow up with my offer. When I was 20 minutes from IKEA I realized my sensory loading was ramping dangerously fast due to neurological fatigue (a couple of unexpected factors had inserted itself into my day). When I got to IKEA I realized that I would not be able to make the long drive home. I contacted my son and explained I was at my limit. And so our back up plan kicked in. I met up with him so that he could drive most of the trip home.
The contingency planning for going to a restaurant involves very different factors. Depending on the size of the group or the busyness of the restaurant I have to make a few decisions. If we are with a large group or the restaurant is quite full, I will walk in, check the menu, let someone know what I would like to order and then leave the restaurant. Once the order arrives I will come back. Once the hectic activity around ordering is done, I am able to participate. This is where texting can be very handy.
If the restaurant is quiet, I will do my own ordering. However, when the waiter or waitress is rattling off the specials of the day I zone out – that’s too much information to process, remembering the different items, comparing the benefits etc. I am better off reading the menu because I can process the information at my own pace.
The contingency planning for attending events is to have an ‘escape plan’ in case I need to leave the venue. I look for seating so that I can exit as inconspicuously as possible. For some events I end up exiting and returning several times. Sometimes I find I need to leave a venue within 5 or ten minutes. I return when I have recuperated a bit or when the activity changes.
My shortest time in a venue before making an unplanned exit was about10 seconds. I had slipped in with a friend just before the event was ready to start. Luckily we were able to grab the two remaining seats by the exit. As we took our seats, all 800 people stood up as the music began. With 800 voices, live music on stage and wonderful amplification the effect hit me like a proverbial brick wall. By the time I realized what had happened and had the where with all to head for the exit, about 10 or so seconds had lapsed. It took me over 10 minutes to recover from the initial effects of the sensory overload.
Making sense of it
While I plan for contingencies, I also need to learn from situations in which I experience sensory overload. At times two seemingly similar situations end up creating two very different outcomes. While to the untrained eye the situations can look identical, it takes a different level of awareness and observation to recognize the differences.
I recently had two seemingly identical experiences. I walked into church well before the worship service was to begin. The pianist was rehearsing and all seemed fine. I later concluded that the music and the extra 15 minutes helped me make the transition into the worship space.
Fast forward a few weeks later. Remembering the earlier experience, I decided to enter the church sanctuary extra early again. Once again there was piano music playing and a soloist rehearsing before the worship service. Within two minutes I realized I needed to get out. The reverberations within an almost empty room from the live music overloaded my senses. Disappointing but an eye opener at the same time.
Making sense of situations when one is living with ABI often requires having the keen sense of Sherlock Holmes to properly debrief the day. Then combine that with the foresight of a prognosticator in order to successfully plan a day. Those two activities have become a necessary part of an ABI life to varying degrees.
Nothing happens without a reason
I always start with the understanding that there is an explanation for each time I experience my limitations. If I properly consider all factors then it should not take me by surprise. It’s not just being aware of the sensory loading caused by the activities that day, but also the amount of sensory loading from the previous day or two. Having a good night’s sleep doesn’t reset my sensory loading ‘meter’ back to zero. The other factor to consider is the significant events I’m anticipating in the next few days.
Each session with my occupational therapist is like ‘writing’ another chapter in solving my personal ABI detective case. More importantly, each session I have with my OT is another lesson on being trained as a detective.
You are approaching your resource limit (orange light flashing)
Halt all non-essential activities
If one ignores the above warnings then things deteriorate further
You have exceeded your resource safety buffer (red light flashing)
Non-essential systems are shutting down
Halt all activity! Halt all activity! Halt all activity (audible warning)
Failure to comply will result in a lengthy shutdown of numerous systems
Be advised that full functionality may not be restored for up to 4 days.
With a computer there is always the option of doing a cold reboot or to carry the analogy further, run a virus scan, malware scan or optimize the drive. And if all else fails, re-install the operating system.
But I am not a robot and so I do not have such obvious early warning signals. I am not a robot and so a cold reboot is not possible. That’s why I need to be mindful of what I am doing and how my body is responding, physically, neurologically and emotionally at all times. My body has about a dozen warning signs but I need to learn to recognize them more readily. The more mindful I am, the better I will be able to function. The contingencies need to be part of my schedule so I can respond to the signals my body is giving me.
The main consideration for any activity that I do is the Cost Benefit. Every activity contributes to sensory loading and puts me at risk of sensory overload. Each time I need to decide what value I put on the potential benefits.
Came home one day to our border collie, Bandit appearing agitated. He did not greet us in his usually excitable display of affection. He promptly led me to the chicken coop where the door stood wide open but no chickens in sight.
The wide open door was no surprise as we release the two dozen chickens each morning to roam and scratch their way into all corners of the yard. What was strange and unusual was the quiet absence of everyone of the laying hens that generously supply us with fresh eggs daily. All I could think of is that my flock of chickens were gone. Probably dead because there was no sign of them anywhere. What didn’t cross my mind at the time is that there were no carcasses lying around.
Bandit led me to some low shrubs where I found 3 chickens. Well that at least part of my flock. There they sat huddling and unwilling to venture out. Bandit followed me to the coop as I carried the three hens to their nesting area. Bandit then led me to a fence at the far end of the yard. There I found 2 more hens equally scared and quietly huddled.
Each time Bandit would show me another location where some hens were huddled. Each time he would follow me back to the coop. He would scan the hens in the coop and head out to another area of the yard. Bandit showed me two more hens, hidden under an out building 300 feet away, hidden behind some boards, completely out of sight. After placing those two hens in the coop, Bandit looked over the flock of chickens, turned around and walked to the house and lay down in his favourite spot.
When I counted the hens, I noticed that Bandit had helped me retrieve every last one. All I could think of was the fact that my flock of chickens were all back. Not exactly a resurrection by almost.
The question I was left with was, “How did Bandit know he had found all 24 hens?” Was he able to count? If he wasn’t counting how else would he know he had them all.
I know that farmers with a small dairy herd have a name for each of their milking cows. They recognize each cow when they are grazing in the field. They know when a cow is in the wrong milking stall. Is it possible that Bandit had a name for each of the hens? Maybe. He never did tell me.
The Lord God had formed all the wild animals and all the birds in the sky. He had made all of them out of the ground. He brought them to the man to see what names he would give them. And the name the man gave each living creature became its name.